Tissue Sample Focus Group FAQs
UK Biobank focus group study on accessing tissue samples and associated records
Frequently asked questions
The aim of this project is to explore your views on UK Biobank accessing tissue samples and associated information contained within participants’ medical records so that this information can be linked to information from samples and other data that you have provided directly to UK Biobank. The results of the research project will be used to inform UK Biobank’s strategic approach to accessing participant tissue samples and associated information via NHS medical records.
If you would like to take part, please log in to the UK Biobank participant website using your Participant ID (PID) and personal details, where you can amend your contact details if required and complete our online consent form by clicking on the “Tissue focus group” button.
No, a place in the study is not guaranteed if you consent to take part. Whilst we would like to include as many people as possible, we need to ensure that we talk to a cross-section of the population so it is possible that we will not be able to include everyone who volunteers to take part. When we know who is willing to participate, we will then be able to let you know whether we will need your help with this project.
If you consent to take part but are not selected for participation in this project, UK Biobank will retain a record of your interest and may contact you should a similar opportunity arise in the future.
UK Biobank will look at the demographic information it holds for participants who have given their consent to take part (sex, age, ethnicity, level of education and the first part of their postcode) and select a cross-section of participants from different areas of the UK to take part in a focus group.
If you are selected to take part, your first name, contact details and demographic information will be passed on to the research team at the University of Oxford who are carrying out this research with UK Biobank.
The researchers will contact you to invite you to take part in a focus group with six to eight other people who are also participants in UK Biobank and will provide all the practical information you will need to attend.
The focus group will be up to 1.5 hours long. During the focus group, there will be a discussion about your views on participating in UK Biobank. You will also be asked to do an activity to stimulate discussion about your views on UK Biobank accessing tissue samples and associated information contained within your medical record, and linking them with information from samples and other data that you have provided directly to UK Biobank. We aim to conduct eight to ten focus groups, both online and in person (in locations across the UK).
If you are selected to take part, venue-specific travel and any other information will be provided to you by researchers at least one week before the focus group is due to take place.
We encourage the use of public transport where possible but at each venue, parking will be available onsite or close by.
We have chosen venues that are described as accessible and we will ask you how we can support any specific access or other needs when we contact you before the focus group.
We will reimburse your travel expenses. We will provide you with a form, and information on how to claim for travel, at the focus group that you attend.
You are welcome to bring someone with you, although they will not normally join the focus group. We suggest that accompanying people bring some reading material, or perhaps visit the local area, while the focus group is in session.
Exceptions will be made if you need your companion present to enable you to take part. In this case, we would ask that you let us know at least one week before the session, where possible, so that we can notify other participants, provide enough chairs and so on.
Please bring glasses if you need them for reading or viewing a screen and any aids that you would usually use in a group conversation. There will not be much writing and we will provide paper and pens. Basic refreshments will also be provided so please advise us if you have any allergies.
We suggest arriving 15 minutes before the session is due to start. A University of Oxford researcher will be on site from 30 minutes before the session, should you need any assistance.
Up to 24 hours before the session, please email firstname.lastname@example.org to let us know.
Less than 24 hours before the session, or in case of problems with email, please call the number on the venue information sheet provided to you by the research team.
A record of your consent status and contact preferences will be collected and stored by UK Biobank.
UK Biobank will use information previously collected (sex, age, ethnicity, education level and the first part of the postcode) both to make sure that we include people from all sorts of backgrounds in the focus groups and to analyse the findings from the project.
UK Biobank will provide people’s first name, contact details, demographic information and contact preferences to the research team at the University of Oxford so that they can contact you about the research. This information will be stored on a University of Oxford online portal accessed only through a password-protected computer.
Audio recordings of the focus group discussion will be stored by the University of Oxford. Audio files will be transcribed (typed up) and then the audio file will be deleted.
The audio recordings from the focus group discussion will be transcribed and de-identified (such that we will no longer be able to identify focus group participants). The data will be pooled with data collected from the other focus group discussion sessions and then analysed by the researchers.
The analysis of the data will be written up as a report for UK Biobank and may be submitted for publication in peer-reviewed journals and/or presented at academic/biobanking conferences. Research findings made available in any reports or publications will not include information that can directly identify participants.
We will share any publications from this project with focus group participants.